A BOY who not expected to live more than 12 months is continuing to defy medical opinion almost 12 years on.
Lewis Evans, 11, was born with heart disease and doctors did not think he would survive beyond his first year.
They also warned his parents they did not believe Lewis would ever be able to walk, but he has again beaten the odds and can walk unaided.
He was born with Charge syndrome – a genetic disorder – meaning he is partially sighted, profoundly deaf and has heart disease.
Lewis is the oldest child of Neil Evans and partner Lisa Burgess, both 31, of The Hawthorns, Acton.
He has already undergone five heart operations, with the first being when just two days old and the most recent taking place at Alder Hey Children’s Hospital in Liverpool.
Proud mum Lisa said: “We see him as a miracle boy.
“He wasn’t expected to live beyond the age of 12 months old and we feared the worst.
“They told us he would never walk, talk or hear. Although he can’t talk or hear, he can walk and doesn’t need any help to do so, although he holds on to me.
“He has been through so much but he never complains. He is never naughty; he is never upset; he is never in trouble; he is always happy.”
Lewis communicates through sign language and writing on paper.
His bravery will be celebrated tomorrow night by family and friends with a party at The Gate Hangs High pub in Acton, following his most recent heart surgery at Alder Hey last month.
Lewis was diagnosed with Charge when he was four months old after chromosome testing was carried out by specialists in Holland.
His first heart surgery was carried out when he was just two days old, followed by further operations when aged two, three, four and 11.
His mum said she had received hundreds of messages on Facebook supporting Lewis when he went for his latest operation, which involved work to arteries and replacing a valve.
“We would like to thank everyone for all their good wishes,” she said.
“We also want to say a big thank to the Gate Hangs High for arranging Lewis’ welcome home party on Friday.”
“It is so thoughtful of them and Lewis is really looking forward to it.”
Lewis, who has the physical build of a child aged about seven or eight, is a pupil at the hearing impaired unit of Borras Park Junior School.
Lisa and Neil also have a daughter, Shanai, who has undergone genetic tests and is perfectly healthy.
She has learned sign language to communicate with her brother.
“They get on really well,” said Lisa. “Lewis is a very happy boy. He smiles all the time.
“Lots of people who meet him say they will never complain about their aches and pains again.”
Lewis will celebrate his 12th birthday in October.
Fiona Davies, a close friend of the family, said: “They have all been so brave and I don’t know how they have got through it all.
“They have really supported each other as a family.”